Dr talking to someone pointing at paperwork with fruit

Get involved as a service user, carer or loved one

Actively involving service users of North East London NHS Foundation Trust together with their carers and loved ones helps ensure that our work is meaningful, inclusive and responsive to people’s whole lives and experiences.   

Find out more about what ‘getting involved’ in research means below.

Research

Research is made possible by the generosity and involvement of the communities we serve. Each year, thousands of service users and the people who support them choose to take part in research across the NHS, sharing their experiences to help us better understand illness and wellbeing, explore ways to prevent conditions, and develop more effective treatments (therapies or medicines).  

This involvement not only helps shape better care and services for future service users at NELFT, but also offers those who take part a meaningful sense of contribution, pride and value.

Getting involved in research might help you to:

  • Understand your own health or condition better
  • Feel more in control of your care
  • Help us improve care and treatments by providing feedback
  • Be among the first to benefit from new treatments
  • Benefit from closer, more regular monitoring by our care teams

Does it take up a lot of time?

Taking part in research does not always require a large time commitment. Some studies may simply involve completing a short survey or providing a sample, while others may include a course of treatment (such as therapy or medication) with follow-up assessments over several months. Studies may take place over the phone, online or face-to-face, depending on what is involved. We always aim to arrange this at a time and place that works for you, and we will make sure you have clear information in advance so you know exactly what to expect and how much time will be needed.

Are there other ways to get involved in research?

You might consider joining a Patient-Public Involvement (PPI) group and work with other people who have similar lived experience of certain conditions or illnesses to you.

You might also join our Consent for Contact (C4C) database. If you agree to join this register you would give us consent for researchers to look at your medical records to see if you are suitable for a specific research project. If we contact you about a study, you are under no obligation to participate, and you can ask to be removed from the register at any time.

What is a PPI group? 

What is Consent for Contact (C4C)

And remember....

Taking part in any research is entirely your choice, it is voluntary and you are free to change your mind at any time without giving a reason or it affecting your care in any way. All our research studies go through robust approval and governance processes to ensure they are safe, ethically sound, and that your personal and confidential information is fully protected. 

How do you take part in a study?

  • writing on a clipboard 2

    How do you take part in a study?

    Follow the slideshow to see the steps that are commonly involved when people take part in research. 

    Research helps guide how our care services, health policies and environments are developed, both now and for the future. Getting involved is a powerful way to share your experiences and help shape health and care in the future!

  • consultation

    Step 1: Finding a study

    You can find out more about taking part in a research project by speaking to a member of your care team, who can tell you about any studies that may be suitable for you. They can help you explore opportunities that may be right for you and answer any questions you may have. You might also see a poster or advert for a study, in public places like the hospital, library or on social media. You can discuss these with your healthcare provider or contact the R&D team at NELFT.

    Contact the research department

    See our Research Studies Directory

  • group conversation

    Step 2: Information

    Anyone who expresses an interest in the study will be given clear, detailed written information – known as a Participant Information Sheet (PIS). This explains what the study involves and helps you decide whether taking part feels right for you, including details such as:

    • What taking part would look like for you – including any treatment or therapy involved, where it would take place, and how long it would last
    • The possible benefits of taking part, along with any risks, explained clearly and honestly
    • How you will be supported and cared for throughout the study
    • Who to contact if you have questions or would like more information

    Your health care team or the study researcher will be able to discuss the information sheet and to help you understand exactly what is involved and answer your questions. They can also read it out for you if it is helpful.  

  • completing a questionnaire

    Step 3: Consent

    If you decide you would like to take part, we will ask you to give your consent. This means that you’ve received all the information about the study, had time to think it over, had a chance to ask any questions, and feel comfortable taking part.

  • medical tests

    Step 4: Data Collection

    Once you’ve given your consent to take part, the research team will begin collecting information. There are lots of different ways this can happen, depending on the study. You might be asked to complete a survey, take part in an interview, share your experiences or information in your hospital record. Some studies may involve providing a sample, being observed during treatment, or being monitored while taking part in a new therapy, intervention or taking a new medication.

    Collecting information may involve attending in person, having a researcher visit you at home, or taking part remotely by phone or online. Before you start, the research team will explain everything involved and work with you to find the easiest and most convenient way for you to take part.

    You can choose to withdraw from the study at any time, and your data can be removed up to the point explained in the Participant Information Sheet.

  • medical consultation

    Step 5: Follow-up and feedback

    The study you take part in might involve regular follow-up meetings over time, or it could be a one-off activity. You may also be invited to take part in a follow-up study or share your experience of taking part. The researchers will always make sure you know exactly what’s involved and what to expect.

    Once the study ends, it may take a few months to analyse the data and publish the results. If you’re happy for the researchers to keep your contact information you might have the opportunity to receive a summary of the findings.

    After taking part you may also be offered reimbursement for your time and any travel costs.

Ways to get involved:

We need your help to make research truly meaningful and focused on the issues that matter most to the communities NELFT serves. Our research team and clinicians work closely together to offer you a range of ways to get involved, share your experiences, and make your voice heard. Research is for EVERYONE – and we can’t wait to hear from you.